No Chemo for Stage 1C?

[cherylm1964]

I was diagnosed with low grade endometriod cancer after have surgery to remove a very large (20 cm)!ovarian cyst. During that surgery, the cyst ruptured and then pathology showed the malignancy. I had my 2nd debulking surgery six weeks later (TAH, lymph node dissection, etc). All of my specimens came back negative after that surgery. So, I am classed as Grade 1, Stage 1C. But the MDT, specifically recommends that I not have any adjunct chemotherapy. Their reasoning is the low grade cancers don't respond as well to chemo, chemo works best the first time you use it, and if we do it now, there is "less in our arsenal" if I have a recurrence. And since I'm NED right now (my CA-125 is 9), there's no way to measure results of chemo treatment. It's not that I'm not happy to dodge chemo but I worry if it increases my risk of recurrence. NICE guidelines say I should be offered adjunct chemo for Stage 1C. I just want to finish any treatment and get on with my life. But somehow, I feel I like they almost expect it to recur. Has anyone had this experience? Maybe I'm worrying for nothing. Thanks!

[Lily-Anne]

That does seem to be standard advice. I was given the option as stage 1C g1 and g3 mixed cells. Chemo is aggressive and damaging to your body. I'd rather run with the advice you've been given. LA xx

[cherylm1964 in reply to Lily-Anne]

Thanks! That's reassuring. It's not that I want chemo, I just want to know that my treatment plan is as optimal as possible. I also realise that I'm very fortunate to be diagnosed early and with a low grade of tumour. C xx

[Petrolhead]

I was diagnosed stage 1C grade 1 by local team. My oncologist suggested watch and wait for symptoms. As I did not have any symptoms in the first place it was not good enough for me. I got a referral to the Marsden and the oncologist there agreed with me to have chemo and a specific monitoring regime.

When my hysterectomy was done they did not do abdominal washings so I did not know if there were any wandering cancer cells to fester later. If they had done so my decision could have been different.

Did your team do abdominal washings?

Best wishes

Fay

[cherylm1964 in reply to Petrolhead]

I don't think they did abdominal washings. I've also been told to watch for symptoms but I also didn't have any to start with. My large cyst was found when I was admitted to hospital for a gallbladder attack. I think I need to talk further with my oncologist who I generally like and trust.

[Petrolhead]

Please keep us updated.

Best wishes Fay

[Sunfleury-UK]

I was dx 1c grade 1 mucinous (NED post surgery) & 4 years ago the advice from my team at The Christie was Carboplatin only which I took. You'll find if you use the search box that there are fairly frequent discussions about the advice re chemo for stage 1c. There will be variables depending on each individual circumstance but there are also a range of responses from teams. Some will advocate bith carboplatin & taxol, some single carboplatin & others none... All chemo is a balance between potential risk and potential benefit. It's a difficult thing to find your way through it... As Faye says above, there may be benefits to seeking a second opinion if only for reassurance & clarity. Best wishes, Sx

[yewbarrow]

I don't know if it would be of any value to you, but I rang up and asked for a second meeting with the oncologist to discuss further whether to have chemo or not. I was pleasantly surprised that I was given an appointment for the next week. Good luck xx

[Cropcrop]

I was diagnosed 1C3 and was advised to have chemo by my surgeon even though both abdominal washes before and after surgery were clear (my basketball ruptured whilst they were removing it). I was clear cell though so maybe that's why we did the carbo/taxol regime just to make sure. I believe that peace of mind is really valuable so maybe ask for second opinion to reassure yourself? There's nothing worse than 'what ifs' . Hope you get the course of action you are happiest and most comfortable with. Take care and let us know how you get on ❤️Xx Jane

[Martina18]

That does seem to be standard practice. I have stage 1c but grade 3 clear cell OC, tumor also ruptured in surgery, and I consulted with several doctors ALL of whom told me I needed to do chemo which I did 6 cycles of. Was not even given option of less cycles even though clear cell is often not responsive to treatment. It seems to be a different story if you are low grade , I met several ladies who did not get chemo with that dx. I would go with the advice, perhaps get another opinion just to confirm it and despite your worries about recurrence which I am right there with you, definitely consider it a blessing not to have to go through the challenge of chemo.

[Ruqys in reply to Martina18]

Hope you are fine, read your post today as I too have been diagnosed with GCT followed by total hysterectomy. Now the problem is histopathology says it is stage 1A and the surgeon said that there was a 2cm rent on posterior surface which make it 1C. They are suggesting chemo. Kindly guide me what to do out of your experience and Can you say which grade it is.

Thankyou

[Hidden]

So sorry to hear you have reluctantly joined the OC club but be assured you are not alone in being confused by all the varied advice you get for treatment of this disease.

I am in the states and have a low grade endometrioid OC stage 2A 10 cm cyst removed (no rupture) and clear washings/lymphnodes/other organs. My oncologist recommended chemo but I refused due to the cost/risks – benefits, potential complications (blood clots from chemo drugs/port, blood transfusions, infections, no immune system, current comorbidities, multiple side effects short and long term, no guarantee it will work for you, etc.) I received a second opinion from one of the top 3 OC treatment hospitals here and was told chemo would only add 10-12% to my overall survival if they picked the right drugs and my body could handle the numerous complications/side effects. Ovarian cancer is notorious for recurrence regardless of the treatment you accept and I would rather not be homeless trying to afford a treatment that may not work for me. I have changed my diet (keto-no sugar/carbs) and take various supplements which might slow down the disease but am not expecting a cure. It has been almost a year and I feel fine with no symptoms of a recurrence so I will enjoy my life. Check out a book by Nasha Winters ND “The Metabolic Approach to Cancer” for ideas to improve health after cancer. This author had stage 4 OC and did not do chemo/radiation treatments - still alive 20+ years later. Do your own research before you decide what is best for you. Take care

[cherylm1964 in reply to Hidden]

That's interesting because I've followed a keto diet for years. And my oncologist referred me to a homeopathic physician to cope with my surgical menopause issues. I've started acupuncture and some homeopathic meds, including iscador (mistletoe) which is supposed to less the chances of recurrence.

[Hidden in reply to cherylm1964]

I am looking into iscador but not sure where to get it in US as it is not approved treatment. What has been your experience with it thus far? Is it expensive or have many side effects? How long do you need to be on it? The oncologists here would never refer a cancer patient to a naturopathic doctor (against AMA rules I think) and will not give you access to oncology nutritionists unless you accept their chemo/radiation treatments.

[cherylm1964 in reply to Hidden]

I'm getting iscador on the NHS and it doesn't cost me anything because prescriptions are free for cancer patients. I take it orally. It's a liquid and I mix 6-9 drops with a little water. I take it twice a day - morning & night, only Monday to Friday, 3 weeks on & 1 week off. I know sometimes they inject it directly into tumours but I don't currently have any. I've not noticed any side effects from it. I've been taking it for about 2 months.

[cherylm1964 in reply to cherylm1964]

Also, I'm not sure how long I need to be on it. My follow up appointment with the physician is in early September and I have enough to last me until then.

[Rowan66 in reply to cherylm1964]

Are you based in Scotland? Sorry just realised your post eas a few years ago. I currently take mistletoe drops prescribed on the NHS x

[cherylm1964 in reply to Rowan66]

Hi ,

I’m in London. I was prescribed iscador at the Royal Hospital for Integrated Medicine. I’ve been NED for 2.5 years and no longer taking it.

[Chezp]

Good morning flower,

From my experience they don't put you on chemo unless it's stage 3 as I have. I understand chemo doesn't have such a good effect on stage 1 & 2. Personally wouldn't wish chemo on anyone unless absolutely nessecary. It's tough at times.

Keep smiling and easier said than done, try not to worry...

🌻🌻

[Petrolhead in reply to Chezp]

Hi Chezp

I am surprised by your reply as NICE guidelines for medics recommend chemo for stage 1C and above. Very few doctors go against these guidelines as they have to justify any decision especially if different to what is the accepted practice.

Fay

[Ruqys in reply to Petrolhead]

What is 1C grade 3

[Chezp]

I meant grade 3. Oh my, I'm so so sorry! Bloody chemo brain!!!!

[Petrolhead in reply to Chezp]

Explains that then.

Cheers Fay

[cherylm1964]

Thank you all for sharing your experience!

I really love my consultant oncologist. She's a good listener, always takes my concerns seriously, and I believe she gives me honest answers. So, I called and left a message for her. Guess what? She actually called me back! We spoke over the phone for about 20 minutes and I expressed my concerns. I am staged at 1C because my tumour ruptured during surgery. She said that about 97% of those cells are nonviable to begin with. Since it happened in the operating theatre, the team "cleaned up" quickly. My cancer is low grade and it is not very aggressive. Statistically, there is only about 10-15% chance of recurrence grade 1, stage 1c1. During my 2nd surgery, they did abdominal washings. All specimens were negative. As I am an otherwise healthy 52 year old, the side effects of chemo currently outweigh any value that they might have for me. She didn't feel that chemo would greatly improve my odds.

I will have 3 month follow-ups and they will check my CA-125 at each appointment. Since I never had any symptoms to begin with (and that concerns me because I'm supposed to watch for symptoms), she suggested that she will order annual CT scans for the first 2 years.

I guess I'm feeling better about the situation. I think we all live with the shadow of recurrence lurking. I think I'll just get on with my life and cross that bridge if I ever come to it.

Much love to you all,

C xx

[Petrolhead in reply to cherylm1964]

Glad you have got the info you required. When people explain it can all make sense. Glad you have been reassured.

Fay

[Bambi62 in reply to cherylm1964]

Hi Cheryl. I have sadly just joined the OC brigade. My situation is almost identical to yours. Mine was found incidentally after a ct scan following a fall down some stairs. 8 weeks later I had a TAG and Grade 1 Stage1C2 found. The have offered me chemo as an optional insurance with only a 3-4% benefit of having it. For your very same reasons I am very reluctant to go through the carboplatin chemo if it has little or no benefit. I am agonising over the pros and cons of it all. I am currently NED. What did you decide in the end? I am sort of the opinion to best wait and see. I had absolutely no symptoms before the fall and my CA125 was 12! X

[cherylm1964 in reply to Bambi62]

Hi Bambi,

Mine was found accidentally too when I had a CT for a gallbladder attack. I have not had chemo and I continue to be NED 18 months after my diagnosis. I’m still monitored every 3 months. At my last checkup, she ordered a CT scan as part of my monitoring. All good.

I’m happy with my decision not to have chemo. Life has returned to pre-cancer normality. If I need chemo at a later date, it’s still there. Hopefully, I’ll never need it.

All the best,

Cheryl

[Bambi62 in reply to cherylm1964]

Thanks for replying Cheryl. This is my approach too. It's such an agonising decision. For now I am not going to have the chemo and watch and wait. My check ups will be regular and I may never need to go through putting my body through chemo. Your story has helped me make this decision. Thank you. Xx

[cherylm1964 in reply to Bambi62]

Good morning,

I’m glad my experience has helped you. Certainly, discuss with your medical team. As with me, it sounds like the risks outweigh the benefits. Wishing you a good recovery. Xx

[Bambi62 in reply to cherylm1964]

Hi Cheryl. Can I ask about the mistletoe drops you are/were taking . Do you think they are of benefit. I will see my gp about my decision this week and I can ask her about the drops. There are so many differing opinions as to whether to go for chemo or not and it messes with my mind but your story is so like mine it has given me courage to not have it. If tbere is nothing there to treat how on earth do they know if it has been of any benefit. I'l let you know how it all goes. The potential long term side effects of chemo worry me too much if I don't have to have it. Xx

[Sunfleury-UK in reply to Bambi62]

Hi Bambi, so sorry you've had cause to join the forum. Have you found the other threads discussing chemo for Stage 1C? There was a very recent one and it may be that you and the woman going through the similar agonies of having to make such a choice would be able to share this.

The sub-types of ovarian cancer have significance with chemo as well as stage and grade.

All chemo is a balance between potential risk and potential benefit.

Understanding the statistics is difficult and making such a choice at a time of trauma and when we are so ill-prepared can feel overwhelming. I remember, through tears, explaining that I had spent six months the previous year deciding on the colour to paint our bathroom.

You can ask for a consultant's second opinion and I found talking it through with my GP incredibly helpful. Ovacome, Target Ovarian Cancer and The Eve Appeal all have specialist nurse-led helplines.

You will I'm sure make the best decision for you.

wishing you hope and strength, Sx

[Sunfleury-UK in reply to Sunfleury-UK]

Link is here to very recent thread and almav 's experience of dealing with the decision whether to have chemo for stage 1C. healthunlocked.com/ovacome/...

[ScardyCat40]

I have low grade serous and have always had a limited response with chemo but my CA125 has never been as low as yours.

I would enquire about the use of hormone inhibitors such as letrozole and tamoxifen. They would need to test if your tumour is hormone receptive. This treatment has been used successfully in low grade serous.

[Ruqys]

Hi,

My story is same as yours. Kindly guide me should I go for chemo if yes which one. My doctors are also confused whether to go for chemo for stage 1C. I don't know which grade of 1C it is but tumour size is 19cm with high mitotic index.