Surgery or Rad-Chemo for borderline 1B1/1B2

Hi all, 

I'm new here as I recently got diagnosed with Cervical Cancer 2 weeks ago. It's been a whirlwind as I come to grips and get ready to fight this. I just saw the oncologists yesterday and the findings and recommendations are very conflicting so I'm not feeling very confident with the treatment plan and wanted to see if you ladies had any input or advice. I'm a 37 year old with two children and not planning for more so don't need to preserve fertility. I do no smoke, drink or have an extremely unhealthy lifestyle besides the fact that I have a lot of stress from running my own business. 

June 2017 - abnormal smelling discharge that progressed to spotting blood

July 2017 - 2 bleed outs like a period but not on period since 2015 when IUD was placed. Bleeding from cervix confirmed by OB and sent for swab

Aug 16, 2017 - confirmed cervical cancer and initially staged as 1B2 following initial physical examination by surgical and radiation oncologist. Biopsy performed. Told tumor had entire cervix coverage and was 4 to 5cm in size. Surgery off the table and was recommended for primary external and internal radiation therapy with cisplatan boost. Sent for further testing to confirm spread. 

Aug 17, 2017 - completely changed my diet taking out all dairy, meat, gluten, processed foods and sugars - started juicing  On raw plant based diet currently

Aug 21, 2017 - stopped spotting and bleeding from the Cervix completely for the first time since beginning of July

Aug 23, 2017 - CT and MRI Scans

Aug 30, 2017 - follow up with surgical and radiation oncologist to review results and discuss treatment plan. 

Now here's where things got interesting because the MRI results came back better than the physcial findings to the Surgival Oncologist's surprise. Instead of full cervix coverage, it was contained to only the 5 to 9 o'clock part of the Cervix and only measured at 3.2 X 1.2 X 1.2 with no parametrial or lymph node invasion apparent. As such, she wanted to see me again to do another physical exam to recheck because she was sure it was bigger. Being a busy surgeon, she looked all but 30 seconds inside and did the vaginal and rectal test and said, even though the MRI is showing it is only 3.2cm, it feels bigger and I still think it's closer to 5cm. She said it may be my anatomy in that I have a large cervix or it is hard tissue or its the cancer but given what she felt, she was concerned if she had enough margin to perform the radical hysterectomy successfully and as such, still strongly recommended I do radiation-chemo instead of surgery. 

Given the MRI results <4cm and the lack of full coverage of the Cervix for the tumour, I asked if my staging should be 1B1 instead and she said no. It's based on physical exam and the MRI is just a supportive tool. She seemed to almost talk me out of surgery by telling me all of the risks in a very crass manner (ie. I can't do laproscopic so I will have to do an up and down cut of you, it may damage your bladder so you may have to eliminate in a bag forever, we might not be able to preserve the blood supply your ovaries so you could do into early menopause anyway, we don't typically move the ovaries up to the abdomen for women over 30 because you will go into menopause in a few years anyway, etc.). Then she followed up by saying if it was her sister or mom, she would also recommend the radiation chemotherapy route but she she can tell that she could keep talking until she went blue in the face but it wouldn't dissuade me from surgery so I have to accept the risks and go in with my eyes wide open. I mean I read that she had poor bedside manner but seriously, I was petrified!  

Caveat is I would rather do surgery because I can potentially preserve my ovaries and I'm terrified of the long term effects of radiation and chemotherapy since they kill both the good and the bad. I plan on living a long time after so quality of life is important to me but of course, getting this cancer out is primary. 

The radiation oncologist saw me after and she was a little nicer in her approach. When I asked her in a borderline case like mine where it was no longer clear cut for surgery or Rad-Chemo, which is the preferred or suggested method. She said it was like 45-55 to rad-chemo because they will both cure it and that's the goal, but with the surgery, there is a slight chance I might have to do the radiation after and so by going the rad-chemo route first, I could eliminate the complications of surgery and still get cured. But my ovaries would be toast and who knows what other side effects would come after. 

So this is where I am now. I am still leaning more towards surgery but I don't exactly feel comforted that the woman who is going to cut me open is not on board with it. I'm also trying to get a second opinion from another hospital because I'm also not sure of the actual staging either.  Do I trust her fingers and eyes or the MRI and CT scans? 

I'm somehow miraculously thinking that maybe my diet and lifestyle changes may have shrunk the tumour? Who knows but I'm going to keep it up. 

I would appreciate and feedback, advice or experience on either treatment option and what others may have done with this staging. Thanks so much for listening. 

Xoxo

Jo

 

1 Like

Hi jo

im so terribly sorry you have been diagnosed and that this has given you some unclear picture of what you are facing. 

here is abit of what I went through and it's very similar to what you are facing. I had a tumour of 3.4 and it appeared to be confined to the cervix but both oncologists I saw agreed that even though the MRI findings said confined to cervix and because of my anatomy they said they believe it's so very close to the parametrial tissue that invasion to this area would stage me at 2b. I also was hoping for surgury at first but after a lot of research and various reasons and reviewing with these two dr's I realized they we actually very concerned with the cure and making sure that I would not have recurrence. 

In my opinion go for the chemorad!!!

if you want to chat more about the reasons just pm me. I'm sure many ladies would agree this is the better route. I know it's so scary but it's not what you think it will be and surgury has just as many risks of long term side effects  

good luck with what you decide

 

Hi Jo,

im so sorry your going through this it is just pertrifying and i know exactly what you are going through! Im currently on week 3 of chemo/rad treatment. I would recommend going down that route personally just going by what you have said.

when my tumour was initially found they thought was just adequete for surgery and thought i was stage 1b2. But after my biopsies and mri my tumour was actually bigger around 5cm and said my whole cervix was basically replaced with tumour with a small amount of tissue around the outside remaining but still comfined to what they could see but restaged 2b. they said surgery was no longer the right thing to do and said cisplatin/radiation/bracytherapy treatment to cure and they want to treat it as if started to spread and they said they would not want it to come back so this was the better option to cover all basis and treat all the pelvic lymph nodes, ovaries. Uterus etc. if close to the border and they are unsure id go for the most effective treatment you can. Its just not easy. Im 28 with 2 small children, and like yourself want this cancer gone. Hope this helps and feel free to inbox me with anything. Sending lots of love and hugs 

Francesca x

Hi Jo

i had stage 2B and had chemo Rads successfully. I was told it was the plan to cure and it did. The way it was explained at the time was that if I had surgery first there was a good chance I would need chemo Rads too but would have to wait till I had recovered from surgery first. I thankfully have not needed surgery as the treatment worked well. It's a tough 7 weeks of treatment but well worth it for a cure,

hope all goes well for you

julie