Starting Treatment Tuesday 4.12.22

Cervical cancer treatment
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Hi everyone,

I was been reading the posts on Jo’s since my diagnosis on 2.17.22 and they have been so encouraging. I am glad I no longer have use google, which is far less positive.

A little of my back story, just for reference:

I had been having irregular bleeding in between my period, some months but not all for about a year. I chalked it up to stress from starting a new job and relationship issues between my kids dad and I at the time. I was having UTI’s quite a bit, and always had this weird pressure in my vagina that was similar to a UTI. One symptom that would not subside was my discharge. It was usually a yellow grey color, so I thought maybe an infection. Some days it would have a pink color or bloody brown color. I live in US and was without medical insurance so it wasn’t until Nov. that I was able to see my Gynecologist. She did a Pap smear (3 years since the last one) and it came back with HPV, so she scheduled a colp, which came back high grade but still not cancer. I remember after that I had one night of very severe bleeding which wasn’t typical for me. They wanted a clearer picture so they did a cone biopsy under GA. On the 2.17 a week later they said it was cancer. They thought early grade and I would get a hysterectomy and it would all be past me soon.

Instead I went for a Cat Scan, Pet Scan and MRI. They all showed it was a small tumor 3cm I believe and was contained in my cervix. But the Pet showed a suspicious lymph node near the tumor so I had another biopsy under GA to test it. It came back positive and I was told the hysterectomy is not an option and I’m starting Chemo and Radiation this week and will do 4 brachytherapy sessions afterwards. She said the tumor although small is aggressive (does anyone know what that means- grade 3). I am eager to start treatment but what scares me the most is that it will be unsuccessful… does anyone else have that same feeling? I can’t help but think they’ll say it didn’t work, and then I will have to live my life fighting this battle instead of spending it with my boys (3 and 6). Whenever I think about a life for them without their mama it brings me to such a sad, dark place. I try to avoid that all together, but some days are easier then others.

I have done all I can to prepare. I got myself snacks, lotions and chapstick, a blanket and some comfy clothes (all thanks to posts on here from women who have gone through it) I gave up all my vitamins and am trying to eat as much as I can. I’m already thin, and they said they don’t want me to loose any weight, so I’m going to try to eat as much as I can. Since I’m a vegetarian good protein is tough to find. I already told myself- if you’re craving a steak, eat a steak. So we’ll see what my body needs. I am hoping I can continue working- is that too ambitious?

I have a few questions that will hopefully ease my mind about treatment and my life after treatment-

  • what was harder, chemo or radiation? And what were you side effects?

  • I already have horrible hip and back pain on the same side as the tumor. It could be unrelated, who knows. Do you find pain gets better or worse after treatment?

  • I am 31 and was told I would go through menopause. When I asked chemo they said it’s not from chemo and when I asked radiation he said it’s not from radiation so now I’m wondering if I will or won’t? Does everyone?

  • when does life go back to normal? I’m not sure I want it to go back to what it was pre-cancer. I’m hoping this has positive impact in my life and actually brings more happiness than before. I feel like stress will be minimal… because if you can get through cancer then I what can’t get through?!

  • does HPV go away or will it always be there?

  • mamas with kids, how did you manage? And did you tell them if they were still young? I have a 3 and 6 year old who have no idea what’s going on and I’m trying to keep it that way. Maybe when they’re older I can explain to them what I went through but for now I want them to enjoy being kids without the stress of their mama being sick.

  • will I loose my hair with chemo?

  • what barrier cream is best to prevent or help with radiation burn?

  • are you able to go in the sun during chemo?

Sorry for the extremely long post! I am so sorry to all of the woman on here who have gone through this. I can say you are all so inspiring though and without this forum I would have been a mess.

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Hello Hayhay and welcome to the club no-one wants to be in…

As you’ve been looking at the posts you’ll probably have realised that there are lots of ladies in a similar position to you, and who will be able to ‘accompany’ you virtually on your journey and give support and the benefit of their experience.

There is a lot of information on the Jo’s Trust information pages. This is how they explain the difference between staging and grading of cancer:

What is a grade and stage?

The grade shows:

  • how different the cancer cells are to healthy cells

  • how the cancer cells might behave in the body, including how quickly they might grow and spread.

  • Grade 1. These cells look similar to healthy cells. They tend to grow more slowly than higher grades.

  • Grade 2. These cells look a bit like healthy cells and may grow a bit quicker.

  • Grade 3. These cells look very different to healthy cells. They tend to grow more quickly which means they are more likely to spread. Grade 3 cancers might need more intensive treatment than lower grades.”

You have a small tumour but the fact that it has spread to a lymph node means you’ll have to be treated systemically, and having a hysterectomy could be counter-productive as it has the potential to (unwittingly) spread the cancer. You are in the US, so we cannot give a definitive answer, but in the UK platinum based drugs are used for CC, and the favoured one here is Cisplatin. Expect tiredness, nausea and possibly some tinnitus and peripheral nerve issues (I developed a shaky leg on one side particularly) but Cisplatin does not make you lose your hair, which is a boon!

Pelvic Radiotherapy, however, will most likely make you sterile. This is from our information pages:

Why can treatment for cervical cancer trigger the menopause?

Some treatments for cervical cancer can trigger the menopause:

  • Surgery that removes your ovaries, such as a hysterectomy, will immediately trigger the menopause.
  • Pelvic radiotherapy can damage your ovaries, which can sometimes trigger the menopause. If this happens, it is usually about 3 months after treatment starts.
  • Chemotherapy can affect how the ovaries work. They may stop making eggs, which can trigger the menopause.

In the experience of ladies posting on the forum, all who have had radiotherapy have entered menopause. If you are having a standard dose (which would be most likely) this will happen to you to.

EVERYONE is afraid their treatment will be unsuccessful, to some extent. Most of us go on worrying intermittently even when we get the post-treatment all clear - such is the fear that cancer engenders. But CC, caught between stage 1 and 3, is always treated to cure. That it what you have to believe and work to. Your boys need mama, and she will come back to them - but full health and recovery from treatment will take time and most people find they cannot keep working because of the fatigue and other side effects. You will be at the hospital every day so they will need to know something about why - you are getting your medicine, basically. Chemo and radiotherapy will deplete your red blood cells and platelets and give you a nasty taste in your mouth; your bowels and bladder will likely be affected and you may have to change your diet to help your body. Protein will be essential.

Oh you will be a bit of a pin-cushion, I’m afraid - you should have bloods taken every week as well as chemo, to measure your GFR (kidney function), blood cell count and liver values. This is to protect you. In the UK if your blood count is too low they give you a blood transfusion.

It is difficult to say which is harder, because it’s difficult to know which one is doing what, as you’re getting blasted from all sides, as it were! Both will drain you - some people more so than others. Some ladies breeze through, some are completely debilitated by the end.

Some ladies have pain from the tumour which will quickly start to improve. Life may not ever completely go back to normal - there are late effects from radiotherapy which vary between people (and can’t be predicted) and if you do hit menopause it is pretty life changing - BUT - the relief and happiness of being alive and having a future - that is worth whatever it takes.

Some ladies might be able to advise about radiation burn - I didn’t get any and I had radiotherapy from diaphragm down because of para-aortic lymph node involvement. Others have had some issues, but they resolve when treatment finishes. Going in the sun is not a good idea so keep out of the sun and wear sun barrier cream. No sun beds… :stuck_out_tongue_winking_eye: not that you’re likely to feel up to it! We are all with you. X

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Hi Jax!

Thank you for your response. You are so helpful. It seems like the US has similar treatment to the UK. I am going to also have Cisplatin, at a lower dose and then radiation targeting the pelvis and lymph nodes. And then from what I gathered the brachytherapy will target the cervix where the tumor is. It sounds very scary, very painful and very uncomfortable. But in the grand scheme of life- 5 weeks of hell is worth it. Radiation is 15 min a day, and chemo is one day for 6 hours. Assuming, like you mentioned there are no hiccups. I already think I am being too ambitious by wanting to continue with work and will have to reevaluate that as time passes, I suppose. My boys are both in full time daycare, and their dad is going to be home to help me with them. I also have my parents and his parents near by, so I’m hoping everyone will rally and make sure the boys are well taken care of.

I love that they treat to cure. It’s helped me sleep at night knowing that is their goal. I am so young (or so they say every time I go in) and it came as a huge shock, so the word cure has been helpful.

In the UK do you get anti nausea medication before your chemo, in the IV? They mentioned I would get that, plus fluids before and after.

Are there diet restrictions with treatment or do you find that restrictions don’t matter because everything tastes pretty awful? I love my coffee but can imagine I won’t during treatment. I already have such a weak stomach, I’m sure this will be no different.

Hopefully I can get in touch with some other ladies going through treatment when I am, so we can swap tips and experiences.

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Hi there,

So glad to hear you’ve got a good support system around you. You are indeed very young, and this must have come as a huge shock to you. Some people take brachy very well; I found it traumatic but I couldn’t have morphine as I’m allergic to it… nothing else is quite as good!

Hospitals here also vary in terms of meds for chemo. I had a blood test, then if that’s okay (levels within permissible limits) an hour’s intravenous fluid intake with a jug to measure the pee, then the chemo IV. I was given oral antisickness to take beforehand and steroids to take for 3 days afterwards - and antisickness meds as and when needed. I went completely off my drinks and even water was hard to swallow. I still (a year out) don’t love my cups of tea any more - they make me feel vaguely nauseaus. My go-to drink is Diet Pepsi (Pepsi Max Cherry) from the bottle, chilled and COMPLETELY defizzed. It was the only thing that stopped me throwing up after my first radiotherapy (because it was of my stomach too). I shake and drop bits of low cal sugar cubes in to defizz and keep a flattened bottle in the fridge!

We were told low fibre diet; cut beans and brassicas, wholemeal, etc. - all the things I loved - and eat white toast and honey, etc. This is because of the irritation of the bowel and gut. You will have to work out what is right for you - it’s a balance between getting the runs and feeling nauseaus, especially if you get the foul taste, and getting nutrition… which if you’re small to start with you really need.

Most young ladies seem to put weight on after their treatment, particular because the menopause does this to you - I lost interest in food for quite a while and had to force myself to eat, and in the long term I’ve lost weight. Here’s hoping you still can enjoy your coffee, or if not can find something you like to drink, as the treatment dehydrates you and you’ll be told to drink more… :weary:

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So sorry you are in this position, it is such a shock isn’t it.

I had the same treatment you will have, and I found it to be very doable. My team ( I am from the Netherlands ) was very keen on keeping me from feeling sick, I was given multiple different medicine both during and the days after chemo, I never felt sick.

As far as menopause is concerned, unafortunatly your radio treatment will affect your ovaries, and this will cause menopause. Unless your ovaries are placed up higher in your body you will go through menopause. I got my first hot flush on day 12 or so during my treatment .

I am now 2,5 years clear and doing fine.

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Hi Izzzy,

Thanks for the response! I am so happy to hear you’re doing well 2.5 years later!

Hmm… My radiation oncologist said radiation wouldn’t cause menopause, so I’ll have to ask again. Or just wait and see… I suppose it either will or won’t, and either way it’s still better than the alternative. I figure menopause is enviable so I’ll be going through it eventually anyway! All of the side effects outweigh not being able to be around to watch my little ones grow up, so I’ll accept them.

Any tips for everyday life during treatment?

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Hi @Hayhay10 !

There is a post/thread in this section entitled ’ I got my start date!’ I did it to help people see what it can be like. Its a bit of a diary as to what i did and how i felt at different stages of treatment. Keep in mind that everyone handles it differently but its an insight as to what to expect. Im 4 1/2 months post treatment now and just about back to my normal self.

Wishing you lots of love and strength xx

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Hi @Shammy716 I just finished up chemo two weeks ago and radiation on Thursday! Still have brachytherapy but I feel much better and am slowly getting back to life as usual. I think physically I feel good, but I will also be a nervous wreck emotional. I’m not sure I’ll ever not think about cancer or the possibility of something happening again in the future- but we’ll see. Maybe time will heal that wound too!

I’m glad you’re feeling better too! Xo

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Hi @Hayhay10

I guess you’re into your treatment now as I’ve just read your post and noticed it’s a couple of months old.

I was stage 4b when I was diagnosed and told I would be having chemo and radiotherapy. I point blank refused to consider brachytherapy as I weighed up all the pros and cons, risks, side effects and effects on my mental health if such an invasive procedure were to even be considered, so instead I was given an additional 8 sessions of external radiotherapy straight after the first 25. So I have avoided the side effects associated with brachytherapy but I have subsequently been diagnosed with insufficiency fractures in my sacrum (my first 25 radiotherapy were targeted at three different areas, including sacral metastases) and the fractures are a result of that. I also had bone marrow edema in two areas of my hip/sacrum, also a result of the radiotherapy. Both issues have significantly improved over several months.

I had back, hip and leg pain prior to being diagnosed, so once I was diagnosed my GP put me on two types of morphine. I was on a fairly high dose at first but I’m taking about a third of what I was taking a year ago. You have to just accept that you will need a lot of rest after your treatment.

Unfortunately it tends to be afterwards that all the tiredness kicks in. I feel like when I was actually having my treatment, with the daily two hour round trips to hospital, I was fairly tired and emotionally drained (I am formally diagnosed as Autistic so I was a huge challenge, although it’s a challenge for everyone!) But the real exhaustion didn’t set in for a couple of weeks after my treatment, as did some really bad lower back pain which felt like I’d been dropped on my tailbone!

Unfortunately @Izzzy76 is right, radiotherapy does bring on the menopause and I can’t understand why you were told otherwise.

Do you have support at home, that’s going to be important too. I have a fantastic partner who was great, he took time off work during my treatment and he basically ran around after me. I was left with feelings of guilt though, as I felt useless for months.

I hope you continue to feel better and look after yourself! Please let us know how things go. I wish you the very best luck looking ahead, it’s nerve racking waiting for the follow up scans.

Hugs

Lally x

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@Hayhay10
PS re tips post treatment:
Food: Have lots of easy to prepare but healthy food in. With me it was instant couscous, microwave rice, hummus, pita breads, cheese slices, sardines (contains a lot of calcium which you will need post radiotherapy!) dried apricots/mango. Chocolate of course. My partner kept me going with cheese toasties and fish finger sandwiches for weeks at one point because I hardly got out of bed in the weeks immediately after my treatment and I had no appetite. If you don’t have much of an appetite you can always drink smoothies or flavoured milk etc. it’s essential to stay hydrated though.

Skin/Body care: Take showers rather than sitting in the bath as it can be difficult to get out of the bath! I now can’t actually sit in the bath so I may be getting a grant for a walk in shower. Treat yourself to some rosehip oil (Conscious Skincare’s is organic and it’s cheaper than elsewhere plus you get free samples of moisturiser or cleanser etc with every order) It’s full of vitamin C therefore brilliant for dried out radiotherapy skin! In fact I use it on my face too. Also hemp oil.
Post radiotherapy if you have stinging “down below” you can put a pack of calendula wipes in the fridge (in fact that’s probably my number 1 tip!)

Other:
If there’s one thing I couldn’t do without during my treatment and even now it’s the Borrowbox app - and also PressReader app -for a iPad or other tablet. It’s basically free book/magazine borrowing, through your local library membership. If you don’t have library membership email them and get them to send you a membership number. You can with Borrowbox borrow up to 5 E books and 5 audiobooks for a fortnight and also reserve books. And with PressReader you can read thousands of magazines and daily newspapers, there’s other languages in addition to English too.

If I think of any more tips I’ll let you know!
Xx

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